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  • Need Advice Please...

    My 13yo daughter, Lindsay, has a 42 T/28 L curve. We've know about her scoliosis since she was 9yo. We've braced in the past, day and night. Currently, we are going through the Clear Institute program. We started the program in September. Since there wasn't an available spot for months we went to another state (TX) and went through the intensive program for a week, came back and started doing the weekly followups with the chiro in our city (OK). Hope that isn't confusing...my dilemna is...when she started the Clear Institute her curves were 34 T/19 L, they have moved to the 42/28. The chiro wants to move her to 3X/wk because of the progression. I'm hesitant because it hasn't even maintained it thus far. Any advice is appreciated.
    Thank you,
    Tina

  • #2
    What kind of brace is your daughter wearing? Do you know about Spinecor?

    If you have done all that intensive Clear Institute treatment and it hasn't held the curves in check if I were you I'd be looking for a different treatment. So sorry to hear it appears to not be working for your daughter.

    Some other options are Spinecor brace, Structural Integration, Shroth, Cheneau brace with physiotherapy.

    Any other ideas anyone?

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

    Comment


    • #3
      Hi Tina,

      Welcome.

      All I can add is that I agree with Ruth (and you) that the current treatment doesn't seem to be working.

      I'd get a second opinion. Maybe get some recommendations for good pediatric orthos in your area.

      Ruth also mentioned some options such as Spinecor. You need to find out which alternatives might work while taking into account your daughter's age and degree of curvature.

      I'd say - do your homework and try to decide on another course of action fairly soon. This forum is a good place to start - hopefully you'll get more replies.

      Good luck!
      mariaf305@yahoo.com
      Mom to David, age 17, braced June 2000 to March 2004
      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

      https://www.facebook.com/groups/ScoliosisTethering/

      http://pediatricspinefoundation.org/

      Comment


      • #4
        mariaf- Sorry I don't know how to do the quote deal...
        Lindsay does see an ortho and I did have her re-Xrayed today to verify the increase in curvature and it was correct. The ortho says nothing is going to help and that she will keep progressing. He wants to go ahead and do surgery. He also wants to go ahead and do an MRI on her ASAP to see why she's been getting numbness in her arm. Actually we did check into the Spinecor and ended up going with the Clear Institute. After reading so much info on here it sounds that it doesn't work well on larger curves and Lindsay's age group as well as smaller curves and children under 10? I've done so much researching and have come up with the handful of options that are mentioned on here. Its so hard to decide whats best. We are going to try the rolfing this week. I will check into a couple of things I've never came across on here before like the Cheneau Brace and the Shroth method. Thanks for replying! I love this site, I'm so glad I came across it!!
        Tina

        Comment


        • #5
          Ruth- Before we started the Clear Institute program in September she was wearing the day brace, I think it was the Boston. She had to wear it 23 hours a day and she hated it. It was hard for her to wear to school because of PE, going to the bathroom, her pants would ride down in the rear, etc...she was thrilled to not have to wear it anymore, but now I'm wondering if I made the right decision. When we started the C.I. the chiro said she didn't want her wearing it and that it was only making her lumbar curve bigger anyway. **sigh** so, so stressful...I will definately check into the yoga, cheneau brace, and shroth, these are new to me! We start the rolfing this week, I'm excited about that! I was telling mariaf that we checked into the Spinecor in the beginning and we ended up going with the C.I. I'm interested in the Spinecor although we would have to do ALOT of traveling to get it. We live in OK and there is nothing here for that program. I'm just skeptical if it would work or not because of the reveiws I've read on here about it only working on smaller curves and age groups?? What do you think? I'm so nervous about cutting what I'm doing off until I figure out what I'm going to do next. Thanks for the input, it helps to hear from other people that are going through the same thing.
          Tina

          Comment


          • #6
            Hi Tina,

            To do the "quote" thing, just click where it says QUOTE on the bottom right of someone's post and it will come up at the top of your post. Hope that makes sense.

            Thanks for clarifying everything - so you were told she will need surgery and decided to try alternative methods first, right? Make sense - you have nothing to lose. I can understand that it's scary to let go of one method without a "plan B" in place. I wish I had answers for you.

            Good luck and keep us posted!
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • #7
              Re:

              Hi Tina,

              I am sorry to hear that your daughter’s curvature progressive increased. Scoliosis seems to me is very unpredictable. That is the scary part. I am on the same boat as you are. My son who is 13, he wears SpineCor about half years now. Dr. Rivard and Dr. Coillard are the best doctors for the SpineCor. They corrected his curvate down to 31 from 41. Also, the SpineCor has more flexibility compare to hard brace (he was on Boston brace for a year before switch to SpineCor). However, his degree still rapidly progressive to increased and not stabilizes at this stage. His curvature got increase from 31 to 39 now. His orthopedic surgeon suggested the Chevaue brace is better brace for the older kid and better for the bigger curvature. My son also went through the ASCO program in Chester, NJ this summer. But it did not help much.

              Take care,
              Patty

              Comment


              • #8
                Patty, What is the ASCO program?

                Thanks!
                daughter, 12, diagnosed 8/07 with 19T/13L
                -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                Comment


                • #9
                  Tina:

                  Dr. Rivard (inventor of the Spinecor) has told us he considers the Spinecor brace can be effective up to curves of 50 degrees so your daughter is less than that so you could still try it. There are quite a few places offering the Spinecor in the United States. Have you looked on the Spinecor website to see if there is someone near you?

                  While we are trying other treatments for Esme we were not comfortable with her not being braced at all so we went with the Spinecor since we thought she was most likely to actually wear it.

                  Ruth
                  Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                  Comment


                  • #10
                    Just want to add that my son (12) is in SpineCor after a Boston brace did not halt progression. His T curve is about 45 ( compensating L is 38)--the chiropractor who fitted it gave us a 50-50 chance of improvement. We are also doing myofascial release (similar but not the same as Rolfing). How far would you have to travel for the SpineCor? We drive 3 hours. It seems to me that more and more docs are using it....perhaps there is one closer than you think.

                    I think you are right to be researching alternatives. Good luck with the Rolfing and let us know how it goes.

                    Mary Ellen

                    Comment


                    • #11
                      Re:

                      The ASCO program's website http://www.scoliosistreatment.com/

                      Comment


                      • #12
                        Ruth, I did thoroughly go over it awhile back when deciding on which treatment we were going to go with. I believe Arizona or Georgia were the closest states for us; we're in Oklahoma. We would have to fly or it would be a REALLY long drive. I believe when I talked to someone there they said you have to go to the main office in New York for the initial visit and then you do your followups where you live. So it would be extremely tough, doable, but tough. Can you kind of explain the daily regimen associated with the Spinecor? I jotted down a few things when I talked to them, it sounded overwhelming??
                        Heres our daily regimen right now with Clear Institute:
                        5:00am -7:00am workout (overdoor traction, floor/ball exercises, walking with body/head wgts, vibration chair)
                        4:00pm-6:00pm same workout as morning
                        Once a week-chiro for adjustments, special treatments
                        Once a week-rolfing (today was our first day)
                        This is harder than it looks typed on here...lol...it is so tiring for all of us. She is ready to move on to something different. I'm still deciding on what to do. I want to leave and do something different, but then again I wonder if I stay if it would work?? I agree with you on the bracing...I'm getting worried now that she's not being braced because of the rapid movement we've had...sigh...so, so stressful. I think I need some rolfing! Keep posting about Esme! I hope all is well!
                        Tina

                        Comment


                        • #13
                          Mary Ellen, Lindsay's first rolfing treatment was today and she really enjoyed it. For the most part it was very relaxing for her. She felt 'looser' after it was done. Karen (rolfer) said that Lindsay was very tight in her neck and back which makes tons of sense with all the pulling thats done on her neck. I'm glad Lindsay got to relax for a moment and have someone loosen up all the tension she has had.
                          I'm assuming your son is still in the soft brace? How long has he been wearing it? How is his daily regimen? Do you do followups every 3mo?
                          I'm just curious how different the daily regimen and followups are from the Clear Institutes? I feel like we don't have time for anything. Its tough to go on vacations or even leave for a night because of the equipment she has to use for her workouts. Can't put a price tag on health, I know, its just so hard. I'm sure you understand what I'm saying.

                          tina

                          Comment


                          • #14
                            Tina:

                            Esme was doing the routine your daughter is doing but she is not doing this now.

                            With the Spinecor she is not required to do anything else. We thought it came with physiotherapy but Drs. Rivard and Colliard said not. We have sought out the Rolfing (SI) treatments (which Dr. Rivard has approved)as an extra treatment. We also asked if yoga would be okay instead of the ballet dancing Dr. Rivard suggested - he agreed this would be good for Esme. We are finding the new routine is much easier for Esme to deal with than all the wobble exercises, neck traction, leg lifts, etc. we were doing three times a day and the visits to the chiro three times a week. She has more time now to do the things teenage girls like to do and to keep up with her homework better.

                            One thing I have noticed about the Rolfing (SI) treatments - Esme is wiped out afterwards. She usually falls asleep right away when we get home and continues to be very tired for a couple of days. She is also very emotional - either very high strung or weepy. We are told this is to be expected with these treatments since they are getting to the "core" of the person unwinding years of wound up emotion. I am finding this very interesting and I agree I feel like I could use some SI treatments too!!

                            Ruth
                            Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                            Comment


                            • #15
                              Ruth, sounds like Esme was doing more than Lindsay on the Clear Institute...I don't know how you and Esme did all that. We're not doing 3X on visits or exercises, but thats what she's wanting us to change to. I still haven't decided whether to do it or not. I'm leaning more on moving on. I just dont' know where I'm 'moving' to. I'm glad Esme has more time, thats real important too! I hope that Lindsay can get to that point soon.

                              Lindsay's second treatment is this week. The first one I noticed she was very tired as well. Our rolfer suggested Lindsay take epson salt baths after her treatments plus a couple more nights a week. She said that it will make her really sleepy and she should lie down afterwards for the night. And she was right!
                              The only thing she really did on the first treatment was massage her neck and back. I didn't notice any emotional releases afterwards. I have read that it can happen...very interesting.
                              Tina

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